Month: February 2017

I’ve been too fatigued and in so much pain that I just couldn’t get myself to post anything ,but, seeing my Instagram feed filled with so many amazing posts trying to create awareness for rare diseases brought me immense comfort and a sense of relief – we’re definitely not alone. I’m so thankful to have come across such a courageous and inspiring community on Instagram. Knowing that I am #rare and yet there are so many others out there just like me gives me strength to keep going, even through the most miserable of my days.

Here’s to finding cure, and until then, having hope and faith for a much better future.

Maybe this is a more Indianized version of chicken broth or soup. Each time I caught a flu or fell terribly sick, I’d have this made for me. It’s super easy, doesn’t require much effort and is extremely delicious and nourishing. If you’ve got a sensitive gut like me, this is well worth a try!

You can trust me on this one!

Ingredients:

Chicken with bone (any part)

Black Peppercorns (as per your preferance)

Ginger (small pieces)

Salt to taste

Lemon

Cilantro

Method:

All you have to do is dump in all the ingredients (except cilantro and lemon) into a pot, add water (enough to cover the chicken or a little more than that) and let it boil for a good 30 minutes. Lower the heat, add more water if needed and let the chicken slow cook for another 30 minutes. The chicken cooks so well it practically starts falling off the bone :)

If you’d like to have a thicker broth, you could add and reduce the water a few times. Three times works perfectly.

Bowl it up. Squeeze in some lemon and garnish it with cilantro. That’s it!

Day 35: Lower back MRI update (Latest)
I got my MRI done last Wednesday and I have a good news and a not-so-good news to share.

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Good news – There is no new or major injury. I’m still maintaining my count at 9 affected joints (major) and my spine does not show any significant injury caused by me going out for dinner on December 31, 2016.

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Not-so-good news – My spine has been degenerating over the years and there’s not much that can be done about it. I’ve got 2 disc protrusions, reduction in intervertebral disc height, disc desiccation, osteophytic bone ridging, mild scoliosis, mild foraminal steniosis, degenerative hypertrophic arthosis of facet joints, grade 1 anterolisthesis, mild nerve impingement which is worse on the left and correlates with all the symptoms I experience.

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Conclusion 1 – None of the above can be considered “normal” for a 26 year old. While none of it calls for any urgent medical attention, it does call for personal attention and understanding. It also isn’t a surprise because EDS is a degenerative disorder so your body will inevitably tend to degenerate faster than the rest. The idea is to work on preserving, maintaining or trying to slow down the degeneration and avoiding other injuries.

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Conclusion 2 – From my first spine MRI in June 2012 to the second in July 2015, my spine showed a number of new things to take note of. The degree of degeneration from 21 years of age to 25 was absolutely abnormal. However, July 2015 to February 2017, while there has been an increase in nerve impingement, the other main points of concern remain the same and of the same degree. This in itself is something to feel good about and I can’t help but correlate it to how my journey has been from 2009-2012-2015-2017. I can’t help but to believe that the choices I’ve made, no matter how painful, have been in the right direction. It’s extremely validating and I’d understand if no body understands. Most of it required a great deal of consistent internal work + faith in the future + action in the present + open-mindedness to try things which seemed right, all from a place of acceptance.

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When you’re dealing with a connective tissue disorder, meaning that your body produces faulty collagen resulting in weaker connective tissues, it is important to note that every little issue, minor structural or musculoskeletal change and degeneration can add up and translate into immense pain and inflammation. The same symptoms might look and “feel” very different in a healthy body, resulting in a vastly different experience. Unfortunately, not all doctors are aware of how every patient experiences a disease differently as it may not necessarily fit their knowledge from medical books. Hence, I think it becomes extremely necessary to track your personal progress, the rate at which things are changing, and the degree to which they’ve changed as part of your personal illness/disease management programme.

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Action plan-

Moving forward, I’ve got two options:

1. Go to a spine specialist and get injections in my back to help break the pain cycle. As much as these tend to help others, people with connective disorders may not respond too well to them. Coming from personal experience, I can say they did nothing for me and I don’t feel a pull towards trying them again. In fact, apart from other symptoms, the fact that my body didn’t respond “as expected” to some injections + some minimally invasive procedures was what pointed us towards the direction of my diagnosis. I also know that I’m quite sensitive to certain procedures requiring contrast or sedation and end up getting random infections.

2. Continue to give my back the time to heal, continue doing what works for me in terms of pain management (physiotherapy, ayurveda therapy, essential oils, medications, meditation, herbal supplements, respect my nap and bedtime etc.), and slowly build it back to where it was a few months back. This means that I introduce a few minutes of walking every day, a bit of hydrotherapy, then a 30 minutes of Pilates session, then a 60 minutes session and finally 120 minutes of Pilates per week as my back starts to respond. From there on, I start to re-introduce and take on more work and other activities.

Of course, I’m going with option two. Even if option two means having no answer as to WHEN exactly things would improve, it makes me feel a little more in control of the choices I make. So while there is a fair amount of uncertainty around it (which isn’t in my control), my experience over the last few years and the progress is definitely considerable enough for me to trust that I am capable of working with my body and building it up again. As I’ve said in my older posts, I don’t enjoy needing help for things I’ve learned to do on my own or even having to take a few steps back in terms of work again. However, if that’s what my back needs right now, I must come to terms with the present. Denial or distraction haven’t done any good for me and I’m not going in that direction anymore.

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Lastly, I must say that I am so very grateful for the love, support and guidance I’ve found/ had over the last few years. It’s just been a small group of people working with me, volunteering themselves to help, learning to accept my limitations as I learned to accept them myself, trusting me for knowing my body and needs the best, and, never failing to remind me in some way or the other that there is so much more to life and so much more to me than a life-altering chronic illness.

It speaks for most patients with chronic illness/illnesses.
While a major chunk of dealing with a life-altering illness requires one to make difficult choices on a daily basis, living with chronic illness is NOT “all about choice”.
I hope you guys take sometime to read this article.
Thanks!

If you can read your own scans and reports, understand the terms and see how they correlate to your symptoms + ask appropriate questions + are aware that a patient’s real-time experience doesn’t always match the descriptions in medical books (one size NEVER fits all), you can be rest assured that chronic illness has changed you for life.